Rubie’s Service Dog

UPDATE #1: Through your generous donations and sharing our story, a local breeder, Denny's Doodles, networked with another reputable and local breeder and together they purchased a Bernedoodle puppy for Rubie whom we have aptly named, Maya. Rubie has her puppy and the two of them are in love with each other!! God is so good! I'll say it again, God is so good! Future fundraising efforts will continue to not only support our family where we still need it but to also pay it forward so that we can help Denny do the same for another family with a special needs child! Our family is so overwhelmed with joy and gratitude and you can expect to see frequent updates on our Facebook page, Raising Rubie! 



As our friends and family know, since Rubie, our 2.5 year old daughter,  was born she has had an array of inexplicable health concerns.  Let me give a little extra background. Rubie was born premature but otherwise a perfectly healthy in the water natural birth. She was born a perfect 6 pounds. Around two weeks old I noticed her side turn purple and after some convincing on my end her doctor agreed to run some tests to check it out. Tests confirmed that Rubies white blood cell count was critically low and she needed to be referred to a pediatric oncologist at Phoenix Children's Hospital. She saw that specialist for about 8 months of testing and watching and hoping it wasn't cancer before they determined that she likely has idiopathic cyclic Neutropenia but to continue watching her closely for illnesses. Around 4 months old Rubie started doing this awful skin picking to herself that would make herself bleed and as she has continued to do that she has scarred herself. She has no eczema or allergies, doctors ruled that out without multiple tests. Her pediatrician said she had never seen that in an infant or toddler so she didn't know what it was. Rubie was breastfed for 10 months and at 11 months old we noticed something was horribly wrong. We noticed that in addition to still digging in her skin, her stools were Elmer's glue white, she wasn't eating any solids and she was sleeping 16 hours a day everyday. She was sent to a few specialists who ran every test they knew to run and they also knew something wasn't right but couldn't find any definitive answer. Another month goes by and Rubie becomes horribly sick. I found her in her crib barely conscious burning up with a 105-106 fever and purple all over. While waiting for paramedics to arrive she had a seizure. The er doctors were worried because along with high fever her oxygen was in the low 80's, blood pressure in the high 220's and they couldn't get her fever down fast enough with meds. She tested positive for adenovirus and coronavirus and because of her Neutropenia her body just couldn't fight off the two viruses well enough. Luckily, without too much medical intervention she did eventually recover and was sent home but she wasn't the same. This was in December 2019 so we highly suspect she had Covid19 before we all knew about Covid19. Shortly after getting her energy levels back, we noticed that in addition to still not eating solids, still not walking or standing on her own she is now not saying some of her first few words anymore. As weeks went on she was able to make less intelligible sounds. we took her to her pediatrician when she was 14 months old who suspected Autism simply because of the speech regression and delay. They did developmental evals and determined that she was delayed in several developmental areas while advanced in only two other areas and on track for that Autism diagnosis. This was now when Covid shutdowns were in full swing so nothing was in person and we were basically lost. But I knew that diagnosis did not seem to fit or explain anything we were seeing in her, I knew something else was still very wrong.  What were we missing here? Trying not to cry as I type this. It wouldn't be until her two year check up that another doctor in that office noticed a lack of auditory response to her name being called and suggested a hearing screen. It was then that we discovered her severe hearing loss as the cause of her speech regression and not at all autistic. So far they believe the skin picking is a sign of severe OCD, still no answer to the cause of her white stools and waiting on genetic test results for more answers. She does have several other needs and concerns that are ongoing but because of health and safety scares such as her vertigo that causes her to lose her balance, feeding issues that caused a recent choking scare where she did in fact stop breathing for about 4-7 minutes, a run away incident that required immediate installation of a new home security system, several attempts of running into the street and most recently a near kidnapping incident at Phoenix Children Hospital. I’m still in disbelief that she was targeted at a children’s hospital. With all of those things that factor into our concern for her safety and health, our priority right now is her having a full time service dog. Other assistive needs would be things like a sensory swing, deaf alert bracelet, therapy room for her in home OT therapy visits, further testing for a diagnosis that explains her bizarre and chronic symptoms and gosh so much more that I know is coming up on us soon but for now our primary focus is her service dog because my brain can only handle so much at a time anymore. Any additional donations from here on out will also go towards the support of her journey. Rubie is completely deaf in one ear and will eventually be completely deaf in her other ear as well with only a small amount of hearing left in that ear currently. Rubie has struggled with wearing her hearing aids and we’ve already had to order replacements twice now. She is a candidate for a unilateral cochlear implant surgery which should be happening soon as well. 

In lieu of all of this, we have had some unfortunate luck that has created financial hardships such out of pocket cost of hearing aids and additional hearing aid replacements, our only car breaking down, a bathroom flood and several unexpected home repairs that have made it difficult to afford even basic necessities like groceries and mortgage payments. Currently, we have a bill at her pediatricians office and our HSA account is drained after having to pay for dental surgery for our oldest and her audiology deductible. If we can’t pay that bill soon they will drop her as a patient. When it rains it pours. 

Typically, I would not ask anyone to afford us the ability to get a new pet and especially when money is so tight at this time, however this is something that continues to prove necessary for our daughter’s sake and to assist in alerting us to things that she can not yet. There is a program in Arizona that will cover almost all of the cost for the hearing service dog training program they offer for deaf kids like Rubie. With Rubie’s help, we have chosen a perfect dog for her and are praying for any help to bless her with her furever companion. 

We have set the goal at a max of $5000 to cover the cost of the adoption fee $2500 plus puppy vet care, supplies , grooming, etc. Any additional donations will go to help us catch up on growing medical expenses and unpaid bills to get us through this rough phase. 

If you are someone who isn’t comfortable donating but want to offer your support in other ways we’d be so grateful if your share our fundraiser. There is another way you can support our family. My husband and I both build websites and run a licensed and insured car detailing business out of our garage in addition to his FT job, raising our 3 kids, homeschooling and volunteering.  You can connect with us to hire us for either of those services and every dollar we make goes towards the same goal of supporting our family through this time and getting my daughter her service dog.